There are certain things about your identity that are comforting to have reflected back at you, and I think something like hemophilia and the pain that can come along with it, is one of those things.
Connecting with the hemophilia community has been the most beneficial thing I’ve done with my life as a hemophilia patient. I wasn’t always big on the idea, occasionally resisting when my parents wanted to bring me to local chapter events when I was young; but when I finally decided to give it a chance, it became one of the most important things in my life. There are so many events going on throughout the country, and the world, in support of hemophilia patients. There are educational seminars, fun events, and community meetings that can improve your life as a hemophiliac, or the life of a hemophilia patient whom you know, immensely. I strongly encourage every hemophilia patient I meet to go to any sort of hemophilia-related event they can, and I’d like to take some time with this blog post to talk about why.
When I was younger, I really didn’t want to go to any kind of event where my hemophilia would be discussed. Even though I have severe hemophilia, and it’s always been a huge part of my life, I thought spending time talking about it, or meeting other people with it, was maybe giving it too much attention. I rejected the idea that I should be grouped in with other people who have hemophilia, just because I have hemophilia. However, this ultimately made me feel incredibly lonely. While I had fantastic friends and family who were completely supportive and tried to understand what I was going through the best they could, I was never truly able to relate with them in a way that I needed. There are certain things about your identity that are comforting to have reflected back at you, and I think something like hemophilia and the pain that can come along with it, is one of those things. When I finally decided to let my parents take me to an event, one in which I would actually participate, I was overjoyed by the way talking to other hemophiliacs affected my life. Even hearing someone else describe the way a bleed felt was more comforting than I ever thought a conversation like that could be. After that event, I was hooked. I wanted to go to every event I could afford to go to (and there are great programs available through most organizations that can help you get the resources you need to go to these events), and I wanted to meet as many hemophiliacs as I could. I have some great, lifelong friends as a result of these meetings. These friends understand a part of my life better than most people ever could, and because of that, they’re very important to me.
Looking back, I wish I had started going to events sooner. I also wish I had time to list everything I want hemophilia patients to check out, but I will list the main resources that can point you towards different events that happen every year. I attended a camp called Camp Bald Eagle, I make sure to go to every national Hemophilia B symposium, events held by the National Hemophilia Foundation and the Hemophilia Federation of America, I keep watch for local events held by my HTC, and as an inhibitor patient, I also look for different inhibitor summits. This is even a very minimal list in the grand scheme of things. Companies like HF Healthcare also throw events throughout the year that can bring you closer to other hemophilia patients. Connecting on social media, through Facebook groups, or following certain hashtags on Twitter and Instagram, is also a great way to stay connected. Basically, anything you can do to reach out to other hemophilia patients is going to be beneficial. Knowing that there are other people out there going through the exact same thing as you is important, and it can improve your wellbeing by showing you that you’re not alone. I highly encourage anyone reading to check out the links bellow, and see if there is an event near you that you can attend. You won’t regret it!
Get Connected in Your Community
For a complete list of link resources, please click here.